Feel completely lost

[Zen master]

I lost my mother in March. Things had started to settle after a very difficult 2-3 years battling on in the community before I managed to get Mum into a very good care hone close to us and everything Mum knew. Despite these difficulties she was settling in, going out with staff lots and we all were starting to have a better quality of life.
Then Mum has an unwitnessed fall and broke her hip which was operated on. 3 weeks later back at the home and a pulmonary thrombosis took her. I managed to get there in time however witnessed a prolonged attempt at CPR which was horrific to witness and see her last heartbeats on the monitor.
For my mum I was glad I was there to hold her hand at the end even though she may not have known.
For me it stays with me constantly, but I would not take away this however difficult it’s been.
For my other family they were not consistent when at home and some only better when placed so didn’t take the battle on as I did with mum. Didn’t stop the financial queries after the event though.
I returned to work after about 4 months having previously taken 6 months off sick the year before looking after her when at her chaotic worst (or spirited best)!
My job is in healthcare (funding etc) and I found myself reviewing care home placements for people at high falls risk! I didn’t feel able to say no as they have tolerated my absence yet it was like re living a personal nightmare day in and day out.
When the house sale went through and the inquest was postponed it hit me again like a sledgehammer and I’ve been signed off again. I hadn’t expected the intensity of my feelings.
I have found myself in a dark place despite a beautiful supportive family, financially ok but with a job that complicates everything but has been a career for 20 ish years. How stupid. Most people would be envious but it’s hard to find the positive
Trapped, stressed and overwhelmed by the smallest of things that is all so irrational.
Did bereavement counselling which was gentle and nice but didn’t leave me clear minded (sorry).

Mates and family are good but they must be sick of me as I am.

Where and what to do next I truly don’t know!!!

 

[karaokePete]

I can't advise from experience but wondered if you have seen the Society Factsheet about this. In the hope that it helps, here's a link to it https://www.alzheimers.org.uk/media/1026, in particular it deals with your situation from Page 9.

 

[Lindy50]

@Zen master
Your post brought tears to my eyes. I so feel for you, having had a similar career to yours by the sound of it, and having given it up four years ago to care for mum. Mum aged 97 is still in a nursing home and I am finding it next to impossible to move on with my life. I cannot imagine mum’s passing, despite her age...and you witnessed an awful situation, I’m so sorry.
In your case, I wonder do your employers have an occupational health service? They might be able to help by finding you a different work role, that would be less upsetting.
Wishing you all the best
Lindy xx

 

[Zen master]

Thank you.
I work for a CCG so NHS employment. I have been re referred back to OH but last time just after the bereavement it was not overly helpful as the return scenario ended up being so toxic. I have had some initial emails from a senior manager about alternative role and a good first option was made then overruled by someone higher. They do want to speak to me directly and possibly next week but not certain what this will mean. Hopefully not a P45!
My presence has been very limited in the last couple of years for numerous reasons like the hundreds of calls from agency carers, day centres, police +++ and the overall pressure. Many employers would have gotten rid of me so I am grateful but when a lot of people know your business and overlap into work it’s hard as you don’t want to seem weak. To complicate matters further my better half manages the local memory clinic so no respite for either of us !
Experience all round but when it’s family it’s so different.

One major thing I missed was the DNAR that never transferred from hospital so the CPR may have been avoided as this was something Mum would never have wanted for herself.

 

[MrCanuck]

I can understand your feelings. My mother also passed in March after being in care for about 2 1/2 years. Just last New Years day when I was in visiting she was in fairly good spirits but I had noticed her steady cognitive decline throughout the year and I wondered (selfishly I guess) just how much longer will this go on, how much worse will it be - her her and for me? 9 weeks later she was dead for a bacterial blood infection. I'll admit that I felt relieved that dementia would no longer have her in its clutches. Yet I seem to be reliving those last few weeks ever day. Still trying to work through all this.

 

[Lindy50]

@MrCanuck I am sorry to hear of your situation. Your mother's passing must have come as such a shock and it's still relatively early days to come to terms with it.
I cannot imagine how I will feel when mum eventually goes - with dad it was pretty sudden, even though he'd been chronically ill for years - but with mum, because of the dementia, I think my feelings will be more complex

@Zen master I do understand how you feel, being within the system, as it were. I was always at pains not to seem as if I was using any knowledge or contacts I might have had - in fact in retrospect I think I might have been able to fight harder for mum had I not been known within the system, and determined to be super-fair all round. It's hard either way, I know.
Please don't beat yourself up about the DNAR, it wasn't your fault and you can't check everything, especially in a crisis.

All the best to you both

Lindy xx

 

[Zen master]

I returned to work (again) at the beginning of December with some changes made to “accommodate” me and try to avoid things that may not be good for me. Thankful that they have put up with my periods of being away and being not much use when I have been there which has been a lot. Survived the experience of the inquest recently with a narrative verdict given and some questions that have been asked that I await replies on.
Although not quite a year has passed it is coming up in March and it’s been the longest year, the shortest year and by far the worst year of my life. Reading my original post and I’m embarrassed that I’m not much further on and should probably quit my job rather than risk embarrassing myself as my inner turmoil is at times overwhelming.

 

[hiedicat]

Zen master it sounds like you are still grieving and are possible a bit stuck, maybe a sympathetic gp or another counsellor might help. Please don’t be embarrassed everyone has a different journey to make. What about the nhs occupational health advisors are they helpful? I feel for you having lost my own mum to dementia, so many traumatic memories, it is such a horrible disease.

 

[Zen master]

I’ve been down the OH route to plan my return to work on a phased return which has now ended. Embarrassed to say that the OH route has happened more than once now because of breaks caring for Mum and then afterwards. I felt that I needed to say what was expected to try and keep my job. I have a habit of trying to please but to my own detriment.

I am an expert at beating myself up and not sure of how to break the cycle and would like to leave this work behind to start afresh. Tempted to request a career break despite the farce that I’ve barely been there in the last year or so. On a positive note a memorial bench is being installed in a nice place this week. I’ll probably find myself sitting on it a lot!

 

[hilaryd]

@Zen master, your post so resonates with me - and although it's not much help to you, it's a big relief and consolation to me to know that others have similar feelings. It's just over a year since my mum died, and just this morning I was feeling tearful on the drive to work - emotions take you by surprise long after people have stopped asking how you are, and the 'background' feelings/moods just seem to linger on. I also tried bereavement counselling, with mixed success, and have just recently been thinking that I might need to seek more help - but not sure what! Life goes on, work's OK and I've gone back to some of my social activities, but ... What you say about starting afresh makes really good sense to me - I think the experience of dementia caring completely alters your perceptions about everything. The memorial bench sounds good - I think (hope) that taking those kinds of gentle, slow, steady, positive steps are the answer - but that it might well take a while. Wishing you well - and thank you for sharing your feelings.

 

[Zen master]

It’s been quite a while since I’ve posted however I needed to try and add something more positive.

I’ve “managed” approaching a year back at work which has continued to challenge my mood and wellbeing at times. Only a couple of days off for regular reasons so feel proud of myself that I’m starting to live again without the levels of distress that were all to present this time last year.
Unfortunately another close family member is in an all to similar situation however my resilience is holding up. So far at least.

All I’m trying to say is that a year ago I was at a very low ebb and couldn’t see a way forward. I’m now in a better place thankfully and am grateful to the love of my wife and daughters and friends for putting up with me.
Life moves on regardless and this forum was a help in picking myself up.

Still fancy a new career though!

Best wishes

 

[Grannie G]

Thank you for the update @Zen master.

It`s quite encouraging to hear how others manage to try to get their life back after loss. Glad the forum helped.

 

[Kikki21]

@Zen master thank you for the update to your post. I think the trauma over a parent dying is not recognised by people who still have parents living & is difficult to actually comprehend - this is my experience & of course if your work involves dealing with care homes etc then it cannot be easy at all.

I think a death does make you reassess your own life to a large extent & this is where often big changes happen.
My dad died nearly 20 yrs ago & in that same year, my marriage broke up & massive changes took place.

Fast forward 20 yrs & my mum died in March. I broke up with my ex a few months later ( it was a dead end relationship so it rightfully ended) however the trauma of my mum’s death is being massively upcharged & made worse because of the activities of the executor of her will. The wound is not healing & it is a very painful
process.

 

[Pete1]

Hi @Zen master, I do think that we also carry the wounds of the many difficult and traumatic times, which can often span years, prior to the passing of a loved one with dementia, where we witness the person changing and all the indignities and fears that entails. We feel battered and bruised from that journey, making decisions along the way that can feel soul destroying. This can take an awfully long time to heal. I also found that colleagues at work really didn't understand the challenges that face someone caring for a loved one with dementia - and that's not a derogatory observation as I don't think anyone really can unless they have walked in those shoes. Take care of yourself.